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Another with Mild Cognitive Impairment
Posted: Sunday, July 26, 2020 11:52 PM
Joined: 11/22/2019
Posts: 399

I started out posting in the caregiver forums when my mother was living with dementia until her death earlier this Spring.

I am posting here now because communicating with others who have similar conditions and understand the challenges would be helpful and comforting.

I received a dx of MCI last November, I think.  I have learned that I cannot depend on my memory entirely, needing back up documentation on subjects where accuracy matters.

I have scheduled an appointment with an excellent neuropsychiatrist for a full assessment.  I am not comfortable with my current neurologist.  He asks if I have any questions as he is edging toward the door.

I am anxious about experiencing progressive impairment.  As much as possible, I am reducing my "overhead:" giving away clothes that do not fit, ridding my house of knick knacks.  I need simplicity.  I find it eases my mind and frees energy for other things.

Paperwork is in process.  My spouse has power of attorney and I trust him absolutely.

I am taking care of my physical health, getting plenty of daily exercise, seeing appropriate doctors to help with pain, other issues that might complicate things for me and my spouse in the future should my impairment progress.

I find a routine is helpful to keep me anchored.

In short, I am trying to do what I wish my mother had been able to do, or that I had been able to do on her behalf, before she became terribly impaired.

A little bit like being able to apply hindsight.  Not something I've ever had the chance to do before.

Michael Ellenbogen
Posted: Monday, July 27, 2020 6:27 AM
Joined: 11/30/2011
Posts: 4494

 Could your issues be related to stress? 

Posted: Monday, July 27, 2020 7:07 AM
Joined: 11/22/2019
Posts: 399

I am not confident I understand your question.  Would you elaborate please?
Michael Ellenbogen
Posted: Monday, July 27, 2020 7:46 AM
Joined: 11/30/2011
Posts: 4494

 It sounds like you were a caregiver and now dealing with grief. That all can create issues you may be having. May be even some lack of taking care of your self could have an impact on some of your normal test levels like vitamin b or others. 

Posted: Monday, July 27, 2020 8:32 AM
Joined: 11/22/2019
Posts: 399

I have had an MRI which confirms brain abnormalities for my age.  I am just recently turned 58.

I trust the dx.  I noticed memory loss before my mother had her health emergency.

Michael Ellenbogen
Posted: Monday, July 27, 2020 9:45 AM
Joined: 11/30/2011
Posts: 4494

Sorry to hear that I was hoping it was something else., 

Iris L.
Posted: Monday, July 27, 2020 2:30 PM
Joined: 12/15/2011
Posts: 18692

Welcome KawKaw.  Please accept my condolences in the loss of your dear Mom.  I agree with Michael, some of your cognitive issues may be related to caregiver stress, grief and even stress related to trying to avoid Covid-19.  When you go for testing, the neuropsychologist will have ways of distinguishing pathological impairments from situational impairments.  The neuropsychologist should review your thorough history in order to know how to interpret your responses.


You are taking all the right steps to maximize your cognition.  I don't remember if you mentioned sleep, but if you are excessively tired and sleep poorly, consider an overnight sleep study in a hospital sleep lab to look for sleep apnea or another sleep disorder.


I had non-specific changes on my initial MRI.  With each succeeding MRI, the non-specific changes increased.  After the last one, in conjunction with my cognitive level, my neurologist said I have leucoairiosis.  You can do a search for this.  You might want to ask your neurologist if this could apply to you.


You didn't mention if you are still working.  If so, keep your medical status under wraps until you know more about what you are dealing with.  Keep posting.  We want to know how you are doing.  


Posted: Monday, July 27, 2020 7:06 PM
Joined: 11/22/2019
Posts: 399

Thank you, Iris.  I appreciate your welcome.  I looked up the condition you shared and will mention it to the neuropsychiatrist when I meet with him next month.

My mother was his patient.  I was impressed with how effectively and compassionately he treated her.

I am not currently working for money.

You are wise to mention sleep as another element of maintaining cognition.  I sleep more than most people, medications I take are sedating.

I seem to get decent sleep though, a tiny bit of sleep apnea for about a half hour during my sleep study.  The specialist did not suggest a C-PAP machine.

One thing I have had trouble with is occasional falls.  The neurologist noted balance issues tied to the brain damage.  Is this something others experience as well?

I am aware that stress makes my memory issues more troublesome.  Though I try to keep stress low, life will include difficulties.  It is true that I am still grieving for my mother and that being a caregiver caused a lot of stress.

I am currently taking Namenda and will be asking the neuropsychiatrist about other options that might extend cognition.

Thank you again for the welcome, and very best to you and all.

Iris L.
Posted: Monday, July 27, 2020 10:21 PM
Joined: 12/15/2011
Posts: 18692

KawKaw, I have had a dx of cognitive impairment not otherwise specified (nos) for over ten years.  This means CI from another disease besides Alzherimer'd Disease and the other usualdementias.  In my case, I have several possible causes for memory loss, which may be working on me comulatively.  These include systemic lupus, antiphospholipid syndrome, sleep apnea, and hypertension.  It became my motivation to work on all of these issues as much as I was able, to ameliorate my condition.  My efforts have worked for a long time. 

My current neurologist first offered me a trial of antidepressant therapy.  I noticed absolutely no change.  He then offered me a trial of Exelon patch.  I delayed using it for three months, because I was afraid using it meant I had Alzheimer's Disease.  I had a few episodes of leaving my kitchen stove unattended.  This frightened me so much that I told myself that I had done all I could do, and I needed to see if the Exelon could help.  

Within a few days of using the low dose patch (4.6 mg), I noticed improvement in my memory and in my speech!  I was so encouraged!  I had two episodes of slow heart rate, but that never returned.  At my next visit I asked for the regular dosage, which was 9.5 mg, which I have been on since June 2009.  The next month a geriatrician started me on Namenda, titrating up from 5 mg to 20 mg over several weeks.  I noticed more improvement.

FFor years I did believe I had early Alzheimer's Disease.  I am positive for APOe 4 and I have AD in my older relatives, although not in my direct line.  My neurologist monitored my cognitive testing results by computer testing, and these have remained relatively stable.  A few years ago I underwent an Amyvid PET scan, which showed no increased amyloid deposition in my brain.  The neurologist declared this means I don't have AD at this time.  He meant I could still develop AD in older years.  

I am telling you all of this to say that there is not a quick diagnosis to be obtained, which I'm sure you already know from caring for your mom.  Keep doing what you are doing.  Also, whenever the time seems appropriate, think about your life and your "bucket" list.  Do now what will give you pleasure and peace.  If you are spiritual, develop in that area.  You won't know if you actually will develop AD until more time has passed.  But there is so much that can be done to address dementia.  We don't have a cure yet, but we do have ways of making lemonade.

As far as falls go, yes falls are common in PWDs as well as all older adults.  Read online about older adult fall prevention.  If your local hospital OT or PT Department offers a fall prevention assessment or program, take it.  I learned a lot.  Serious falls can be deadly.

I'm glad you are taking these steps early, KawKaw. 



Posted: Monday, July 27, 2020 10:50 PM
Joined: 4/22/2017
Posts: 338

The falling may be related to some type of neurological disorder. There was a time when I was tripping but this is no longer happening. So, I was probably just being a doofus. However, falling can be one sign of a neurological disorder.

You mentioned a tiny bit of sleep apnea. I had/have a very mild sleep apnea. The ordering physician's office staff told me my apnea was so mild that 1) I didn't need to meet with the ordering physician and 2) Medicare would refuse to cover the cost of the machine. However, because of my + Amyloid Scan and the lack of effective Alz medications, my treating neurologist pescribed the CPAP. I tried it, struggled with it for a while, then eventually gave up. 

 Fast forward 2 1/2 years. I consulted with an Alzheimer's Disease expert and he emphatically advised me that the ONLY treatment that could potentially be of use in  stopping/slowing the progression of Mild Cognitive Impairment was to use the C-PAP. (Along with this advice, he also advised me that studies had NOT shown that Aricept, Namenda, and whatever else I was prescribed, were effective in patients diagnosed with MCI). 

I really dislike writing about my issues, but I also remember searching these boards for anyone who might have similar concerns or history. I have received some help from others and will try to continue paying it forward. 

P.S.: I, too, had a parent with AD who died last year. Trying to save my kids from having to deal with the medical, financial issues, as well.

Posted: Tuesday, July 28, 2020 8:37 PM
Joined: 11/22/2019
Posts: 399

Thank you, BadMoonRising and Iris.

I am grateful for the information and learning about your experiences navigating MCI.

I am extremely thankful that I already have an appointment with the super specialist.  These communications give me a better foundation for getting the best treatment I can.

Many thanks!

Posted: Thursday, July 30, 2020 8:47 AM
Joined: 6/28/2020
Posts: 4

Dear Kaw Kaw

I feel tears while reading your post because this is how our family history with AD started. On the other hand, I truly wish that you never develop mature dementia.

First of all, you need keep positive attitude! Think positive is crucial!

Also, are you aware that you can do advanced diagnostic and get personalized advice? My relatives introduced me a test which analyses your brain cells from the hair root. And you get instructions what to take to improve your condition. I know many people who improved their condition. I live in Europe and you can order it online , Check My Brain.

But, please, dont forget to stay positive and never give up!

Posted: Thursday, July 30, 2020 7:22 PM
Joined: 11/22/2019
Posts: 399

Thank you Sariana, I want to balance my reality between being positive and having all the information I need to make decisions.

If there is unhappy news, I want to know it. 

Currently, I still have resiliency to help me cope and allow me to be open to joy.

SF Unforgettables
Posted: Friday, July 31, 2020 12:15 PM
Joined: 3/6/2020
Posts: 8


We are an early stage support group in San Francisco.  We just read your post, and we agree completely with everything you wrote.  

We too, find it's important to maintain a routine.  

If you don't feel comfortable with your doctor, find one that works for you and listens to you.  

Friends can help a lot, and be on your team as you live with this diagnosis.  

It's important to continue to enjoy what you do have.  Live, laugh, and love. 

Don't let the diagnosis run your life.  Continue to do the things you've always done and enjoyed, with the eye that you might make missteps (but don't beat yourself up for that!).  

We have found that participating in an early stage support group has been helpful.  We can talk to other people who truly understand what we're going through.  We've formed strong friendships.  Our care partners participate in one as well.  

We wish you the very best. 


the Early Stage Support Group in San Francisco

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